Calling all TNs
Comments
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Hi Susan! Glad you stopped in to say hello and I'm glad you are happy with the care you are receiving. Sending you love and support to you and your family.
MBJ, Tif has great advice - I think Coolbreeze would have good information for you, too. I have read several of her posts and she is very knowledgeable.
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Ah Susan. Cuddles and cooking shows. It sounds just wonderful. Love to you and your family!
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Susan:
So good to hear from you. Cuddling with the kiddies - doesn't get any better than that! Thinking of you as always, and sending love and gentle hugs,
Linda
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Nothing better than cuddling with the kids...
Here's a big "cuddle" to you Suze..
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Hi susan. Glad you signed on....and so glad to hear your children are doing well. They are amazing aren't they!
Worrying some today about pains in my breast and back but I think they are more aches than deep pains,,,gosh I hate this gift that keeps on giving.
Laura so nice you had a girls night last night.
I really want to talk with my md about Metaformin..any advice on what articles to use...
Cake making...yummy...0 -
Thinking of all! Suze-glad you stopped by with an update. Your children sound absolutely adorable, strong and smart.
MBJ-Hope you fine the info you are looking for regarding liver mets. Are you still in the hospital?
Painting-Hope you are just sore from over doing it!
CC-I did have the surgery when I was 4, everything heart related has been fine since, but some docs can hear a slight murmer. I didn't realize it coud be genetic, but I never really thought about it.
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Speaking of cake, I am up to my eyeballs in it. I bake and decorate cakes. Today I am making a stacked cake with double 16" and 12" layers as well as 120 cupcakes for a company's anniversary party tomorrow evening. After I do these big events, I don't even want to see cake for a long while!!
The kids are anxious for the first cake to come out of the oven. I level off the top of the cake and the kids (and me too) get to eat warm cake!!
Happy Sunday all!!
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Sorry a bit tired--will try to rememember who posted.
Home with hosperus starting Monday (same as hospice)
SUZE: I so love the cooking shows, that you are in good hands and are well loved. Wish we could have all met. I can't have chemo until I feel better.
Crossing my fingers that walking is in in the near the near future and that I regain use of my arm so so I can talk more.
Big hugs to all.
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MBJ - my fingers are crossed for walking and talking in the near future for you, too.
Suze - so glad to hear from you. I also love cooking shows..and snuggling with my girl and doggy!
Speaking of cooking....TifJ your cake decorating inspired me but I'm a bit embarrased to say I'm on my way out the door now to buy a cake (wish you lived nearby). It's my niece's birthday party tonight and I was "voluntold" to bring a cake for the family get together. I got back late last night from a girls weekend with my DD, my GF and her DD and am too tired to bake anything today but I must get groceries.
Take care everyone and enjoy the Oscars tonight!
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About the Metformin thing..I want to take it NOW..I don't want to wait..dang it...I just feel that if there is somehing out there that can help US..let us have at it...
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Sugar- it's okay to "cheat" and buy a cake once in a while!
Suze- I am a cooking show junkie too! My kids likes to watch with me and help in the kitchen.
Titan- why are our doctors denying us something that may really work! Shouldn't we at least be able to try it? Sometimes doctors just suck!!
MBJ-wishing you strength and sending healing vibes!!
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MBJ - It is so nice to start getting posts from you. I am sorry I don't know much about mets to the liver but I will try researching and reading up and will let you know what I find. I know that is where you need the most help from people, information.
Suze - I am certain that you will feel better soon in order to start chemo again. I know you are doing the right thing right now. Sometimes doctors forget that our body needs healing after treatments and that is exactly what you are giving to it right now. Healing can come from Love and Inspiration and Prayers. Cuddle with your beautiful children and they will give you the strength.
Love, love, love and lots of love to both of you inspirational women! God Bless you both.
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I used to love watching Curtis Stone (the Aussie) find someone in the supermarket and go home with them and cook. Don't think it's on any more.
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TFJ- another cooking show junkie here too. I love them. I also bake and ice wedding cakes, I wish I knew how to add a photo so I could show you one.
MBJ - I do hope you feel better soon. This seems to be one train that just won't slow down. Thinking of you and sending hugs.
I don't think the metformin would help me because as I understand it, it is only for early stage cancers so I don't think it would apply to me though I may be wrong.
Susan - I do hope you are feeling better today and that the sun is shing for you. Thinking of you heaps.
Annie
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Annie- I rarely do wedding cakes. I am still fairly new to decorating and while I think I am pretty good, I am not confident enough to do wedding cakes. That is the most special day of two people's lives and I don't want to screw it up!! I only have about an hour of baking left, then on to frosting. Have made 5 batches, but will need about 4 more! My back is killing me!!
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CS-I may be wrong but I believe you are still considered early stage
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Tifj - you are very modest I am sure you do wonderful ones. Backache is the worst part of cake decorating and also the hard job of getting the icing right for sugar flowers sometimes makes my hands ache. Once you have done one wedding cake you will be off and flying. There is nothing nicer than it all turning out beautiful for the bride.
Annie
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Annie- I am still working on flowers, not my best area. If you can figure it out, I would love to see one of your cakes! My most difficult so far was a 4' long electric guitar cake.
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CS- I think mccrimmon is right, you are considered early stage.
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Cocker spaniel- there is a stage 4 trial in canada, I have heard of it benefiting all levels of BC. I guess we will all see if it helps me. It changes the way the liver excretes glucose and also affects the food supply to cancer stem cells. I'll actually be starting it Tuesday not tomorrow after I get my lab tests done for chemo.
Yum, I love cake! All of your cakes sound so good.0 -
Just back after 10 days out west, skiing, seeing our son etc. Reading through the pages and pages of posts I've felt just about every emotion I can imagine.
Suze: Sigh, what can I say.... You are such an intelligent, grounded, inspiring woman - thank you for popping in to post. My heart literally aches... and yet it also soars, hearing how beautifully you are dealing with the crappy cards you have been dealt. With such a pedigree, your children are amazing creatures I am sure. I hope the hospice care continues to gives you all the comfort you so richly deserve.
MBJ: So glad to see you posting again... and I hope the pain eases up and you get back your mobility and strength soon. I've always admired your fighting spirit.
LJ: As others have said, your energy continues to amaze. I love hearing about all your wonderful experiences. And I hope the halaven and metformin keep the beast in check for you, dear lady.
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Babs37, Mccrimmon, Laurajane - thanks for your posts but would I still be deemed as "early stage cancer" if I am stage 3, 111a and it has already gone to the node?. Not sure at all what the staging means other than it not so good.
Tifj - I will try and get my daughter to put one on. She is a wiz at the computer as she does training for it at her place of work.
Susan and MBJ - I do hope you are both having a good day and the sun is shining for you. Sending lots and lots of huggs.
Annie
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CS-I read that stage I-II-III are considered early stage. I had 2 positive nodes and I'm on the trial. To be accepted in the trial, I had to have a lung Xray before and all the other tests like MRI and mammos had to have been done in the last 6 months or less and some blood tests. In the trial I am on they didn't accecpt stage IVs. I can stay in the trial for 5 years OR until a reccurence (then I would be off the trial).
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Babs37 - which trial are you participating in? With the exception of BRCA1, our diagnoses are similar.
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CS - read staging on this forum, 3a, is still considered early, 2a can be in the nodes as well.
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lisa- I'm on the Metformin clinical trial. I started this last april after chemo and right mastectomy.
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I am 2A and in the nodes.
Maggie
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I have a question about staging. Since I did neo-adjuvant chemo, which tumor size should be used to determine staging - the pre chemo estimate (4 to 4.5 cm) or what they actually found at surgery (1.1 cm)? All of the online calculators for staging don't specify which size should be used for women who did neo-adjuvant chemo. My nodes were negative. Thanks.
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Annie- I wasn't implying that you were stage 4 just that I am. I've heard that there are thoughts in the science- tech world that metformin could possibly help a lot of us with TNBC.
I hope you all have a good day today.0 -
I got a PM requesting that I re-post the information on the Metformin clinical trials. I'm always willing to help my BC sisters, so here goes:
This link will give you a list of ALL the metformin and breast cancer clinical trials that are registered through the NIH. There may be others conducted at local cancer centers, but these are the "biggies."
http://www.clinicaltrials.gov/ct2/results?term=metformin+and+breast+cancer
The one most of you will be interested in is titled "A Phase III Randomized Trial of Metformin vs Placebo in Early Stage Breast Cancer"
If you look in the details, you may qualify for the trial if your breast cancer meets the following criteria:
T1-3, N0-3, M0 disease, with one of the following TN combinations:
- T1c, N0, AND ≥ 1 of the following tumor characteristics: histologic grade 3, lymphovascular invasion, negative estrogen and progesterone receptors, HER2-positive, Oncotype Dx recurrence score ≥ 25 (of if Oncotype Dx recurrence score is not available, Ki67 > 14%)
- T2-3, N0
- T1-3, N1-3
There are other criteria, but the biggest exclusions are no recurrence, no Stage IV, no known kidney or liver issues, no diabetes, no drinking more than 3 drinks a day
For Stage IV ladies, you will be most interested in this one:
A Trial of Standard Chemotherapy With Metformin (vs Placebo) in Women With Metastatic Breast Cancer
The purpose of this one is to combine metformin with standard chemo protocols to determine if metformin increases the effectiveness of the chemo and to determine if it changes progression-free survival.
There are other trials, either ongoing or concluded, that have tested whether metformin taken prior to surgery can have an effect on the existing tumor, either by reducing the Ki67 or causes apoptosis (not the same as necrosis)
http://en.wikipedia.org/wiki/Apoptosis
In my case, going back to my original diagnosis, I started taking 1500 mg of metformin on the day my lump was found. My mammogram and MRI showed a lump around 3 cm. When I had my lumpectomy, the actual lump was around 3.4 cm but pathology showed the cancerous portion to be just 1.8 cm. No one could explain the cause of the death of the rest of the tissue. Might have been caused by the metformin???
Another interesting study in this group is
Phase II Short-term Adjuvant Therapy and Biomarker Studies With Targeted Agents in Women With Estrogen Receptor Negative Breast Cancer
This study, funded by Komen and to be conducted at MD Anderson, will be used to determine if taking metformin can "prevent" cancer in the unaffected breast of us TN gals. If this study had been in the works last year, I might have held off having a bilateral mastecomy and just done the Uni.
There is so much research being conducted with metformin, it will be grossly disappointing if these studies don't pan out.
For those of you who have an MO who is not enthused about prescribing metformin, I have a couple of suggestions:
- your PCP is more likely to be familiar with metformin because it's the first line of defense for anyone diagnosed with Type 2 diabetes or pre-diabetes;
- it's dirt cheap - $4 a month / $10 for 3 months at Walmart and other pharmacies - no insurance required for that price;
- if you are overweight, it will be easier to get your PCP to prescribe it;
- if your fasting blood sugar is approaching or over 100, it will be easier to get your PCP to prescribe it;
- if you suffer from PCOS, your PCP or GYN will usually be willing to prescribe it;
- search your area for clinical trials - they are taking place in hundreds of locations across the country;
- seek a second opinion from another MO in a different practice than the one your current MO is in;
- if you are in the Kansas City area (TifJ - this is for you), try Dr. Shalina Gupta-Burt, she was very knowledgeable about the metformin trials - she told me last year that I was on the right drug.
http://hcamidwest.com/healthcare-services/cancer-care/pdf/cancer-Burt.pdf
http://www.healthgrades.com/physician/dr-shalina-gupta-burt-x3p93/
Good luck, ladies!
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